“I am Struggling”: Lenses of Chronic Disease in Film

Kyle CantonSchulich School of Medicine & Dentistry
Western University
Class of 2018

“We are all different. However bad life may seem, there is always something you can do and succeed at. While there is life, there is hope.” – Eddie Redmayne as Stephen Hawking, “The Theory of Everything”

At the Ontario Medical Students’ Weekend (OMSW) last fall, Dr. Shannon Arntfield of Western University delivered an engaging and moving keynote address on narrative medicine. Her talk led many of us to consider the lenses through which we view disease, and what we can do to humanize our patients when it is all too easy to focus on the science underlying their conditions. For me, this introspection manifested itself through the silver screen. As an avid lover of film, imagine my pleasant surprise when awards season began and both ‘best actor’ frontrunners portrayed characters struggling with chronic illness: Julianne Moore in “Still Alice” and Eddie Redmayne in “The Theory of Everything”. These films shine a human light on two very different but equally devastating diseases, and allow for an emotional, immersive look into the effects of chronic illness.

“Still Alice”, based on the novel by Lisa Genova, is the story of a successful linguistics professor and her family struggling with early onset Alzheimer's disease (AD). In a career-topping performance filled with subtlety and respect, Julianne Moore brings Alice to life from the early signs of cognitive impairment to mid-stage AD. While the film does not hold back in its often bleak portrayal of the disease, it is simple and subtle in its approach. It favours personal moments of Alice’s day-to-day life over grandiose, dramatic scenes: momentary glances of confusion; the continuous decline of a ‘Words with Friends’ score; a dizzying moment of panic upon getting lost on a regular jogging route. These small, but remarkably human, glimpses into the character’s life capture the heartache, turmoil, and confusion of AD with unwavering simplicity and honesty, in a way rarely seen on film.

In a recent Facebook post, the daughter of a prominent choral conductor who currently struggles with AD (and for whom I have immeasurable respect and admiration) said this of “Still Alice”: “They did a great job at depicting what Alzheimer’s is like. Watching this movie was like reliving the last 5 years of my family’s life. I think every situation that they portrayed we have dealt with” (reproduced with permission). In addition to my personal relationship with this family, I have volunteered with people living with AD. These experiences, however, generally occur when those with AD are at their best – being cared for by capable individuals and/or stimulated by engaging volunteers and friends. Conversely, “Still Alice” permits a glimpse of the low moments. The personal moments. Those of fear, of solitude, of degeneration. In order to best serve our patients and communities, I think these are feelings and perspectives we as health care providers ought to attempt to comprehend.

Similarly, in “The Theory of Everything” Eddie Redmayne portrays famous physicist Stephen Hawking, who has lived for over half a century with amyotrophic lateral sclerosis (ALS). Most people have a general idea of what ALS entails – progressive loss of motor control causing ever-decreasing functioning. What makes this film special, however, is that it focuses not on Hawking’s physical decay, but rather its effects on his life and relationships, primarily that with his wife Jane, played by Felicity Jones. These two actors are the perfect complement. Redmayne portrays the clinical progression of ALS with astonishing authenticity and precision, while Jones gives us an underrated look at the psychological and emotional effects of caring for her husband. As in “Still Alice”, “The Theory of Everything” contains innumerable understated moments of brilliance in which fleeting feelings of heartache, fear, and anger are depicted in a very visceral, human way.

As a future physician, the scene depicting the doctor’s delivery of Hawking’s diagnosis and prognosis of two years stands out as particularly impressive, for several reasons. First, in a stunning display of expert cinematography, the majority of the scene is shot through a tight fisheye lens focusing on the doctor, allowing the viewer to experience the intimacy of this terrifying occasion from Hawking’s perspective. Second, the scene unfolds on a bench in a hospital hallway, inviting consideration of the conditions for which we should strive when delivering such news. Finally, and most importantly, the conversation is not cut short by a zoom-out and swell of emotional music (as we so often see in film), but is played through to its conclusion, with Hawking asking questions and receiving honest answers. The cinematic realism of this scene thus permits a better connection to the confusion and disorientation of someone with a chronic condition, and promotes an empathy from which not only future physicians, but everyone, can benefit.

Stories such as these are important to tell, and to watch. They allow us to view disease from different perspectives, and to more acutely appreciate the mental toll of chronic illness. In one of the most impactful scenes of “Still Alice”, Moore delivers a heart wrenching speech in which she insists:

“I am still alive – I know I’m alive. I have people I love dearly, I have things I want to do with my life. I rail against myself for not being able to remember things, but I still have moments in the day of pure happiness and joy, and please do not think that I am suffering. I am not suffering, I am struggling. Struggling to be a part of things, to stay connected to who I once was. So live in the moment, I tell myself. It’s really all I can do… live in the moment.”

It is especially important for physicians and health care providers to be able to support their patients through the struggles like those of Alice and Hawking – to anticipate their concerns, to predict their fears, and to be sensitive to their mental anguish. As the future of their field, medical students should pursue multidisciplinary approaches to developing these skills. And if one of those approaches can be to break from studying and go to the movie theatre, I couldn’t name one fellow student who would object.